Well last week I went to a traditional Rheumatologist to get checked out.
Regardless of my still high ANA they told me that they would not recommend putting me on the traditional medicine, corticosteroids or methlotrexate. And they don't really care to figure out why the ANA is high as long as I am symptom free. Hrm. Whatever happened to preventative medicine?
She said that a lot of people have a high ANA. Now I am not satisified with this answer. I want my ANA to be at a fantastic level. Or this, why do a lot of people have high ANA's? Just because it's common that does not mean it's ok. I will be able to knock down this ANA, but it is gonna take sometime to naturally get my body at the equilibrium that I want.
Really I am having just some minor joint stuff, which a lot of people have. And also, a lot of allergies.
I was very disturbed sitting in the waiting room of my Rheumatologist. There were A LOT OF PEOPLE THERE. And I am not talking about a lot of old people, I am talking about a lot people around their 30's. There was one guy my age using a cane. :( DAMNIT! Grrr....I seriously believe that just does not need to be the case! There was an older woman sitting in a wheelchair.
Do these people know how much diet can better their life and even get them off the medicine?? Give them their life back??
So I am siting in this doctors office and she almost seemed intimidated by me. I was polite, I did not walk in there as some know it all. I walked in saying nothing more than hi. I felt some pretty strange vibes from her and I think I made her nervous. The first thing she said to me in very panicked voice was, "You, you're in school, what are you in school for?" I said, "Nursing." And she didn't say anything after that. Yeah, I am not a med student, a mere nursing student. And actually I've had some struggles in nursing school, although I am due to graduate next semester currently I am a State Tested Nurses Aide. I do the dirty work!! Really, I do do the dirty work. Hopefully someone got my pun there!
I mean seriously you don't have to be a rocket scientist to do what I've done! I mean I'm not even close to being done, this is a life long thing, but what has happened here is definitely significant.
I seriously asked that doctor why she wanted to be a doctor?? I was not trying to be a jerk. I was curious. I did not ask it assuming anything. I said, "I know this is a tough field to be a doctor in, it's confusing, it's complicated, and you have to watch a lot of long term suffering." I told her that I felt very lucky with my progress and that if what I was doing was a bad idea that she should tell me. If she thought that I was making some terrible mistake, I really wanted to know her honest opinion. I mean this is an important question to ask, we are dealing with my life here. I take this all very seriously.
She told me, "No, you're not making a terrible mistake. Just keep eating right and exericising."
But! The last thing that she did say was that my blood test did not show that I was a Celiac. She said, you are not a Celiac. My IGg was low. But I still carry the gene. This obviously really bothered me. It bothered me for a few reasons.
A.) All of these doctor's diss my doctor without even reading up on any of the research he uses. They have no idea what is going over in his office. All they see is the word Holistic and they immediately write him off. In fact he is a pretty famous doctor, has tons of patients, has had a lot of his patients on the news, people come from out of the country to see him, and he teaches a ton of lectures. He doesn't want to give a faucet education. They write him off without even reading anything or without even putting any rational thought into the situation. Where's the progress???!
B.) It is not just my doctor that knows that Celiac Disease is very hard to diagnose. This is actually common knowledge about Celiac Disease. It can be silent! And I carry the friggin genes. I know that just because I carry the genes that the gene's may not be activated. But come on! Look at my symptoms and then my insane, immediate, improvement on a gluten free diet! They were most definitely activated.
C.) Ok I know doctors are not stupid! Seriously to go through all of that schooling you have to be pretty smart! I am not even sure that I am intelligent enough to be a doctor. I would need some serious math tutoring. Why don't these doctors keep up on all of the different options in their field? Even if they don't practice it. I know they are really busy, but some of them just don't seem interested enough or perhaps they are burnt out on their field. Not all of them, but some.
D.) Is all of this controversy over money? I mean I don't want to conclude that. I mean I was reading in The Arthritis Breakthrough that the rheumatology field is one of the biggest money makers in the field of medicine. If we can cure these people with diet and exercise what will happen to this field? I mean I know if everyone knew about this treatment that they might not follow it because it requires a ridiculous amount of discipline. This is too bad because if we could just clean up our food industry it would not require as much intense discipline that it currently requires. But the Antibiotic Therapy, now that doesn't require a lot of discipline. It is a pill. A cheap pill. Maybe that's why it's not used? I don't understand.
I truly believe that diet and exercise are just so beneficial and that it is not stressed enough. Everybody knows this already. I would never assume that it is too hard for someone to do. I think it is important that we expect more out of people than that. It is ok to fail a bazillion times, I did when I first started to change my diet. But you just keep trying again and again until you get it right. We're dealing with quality of life here! We're dealing with potentially debilitating illnesses.
I really hope that this blog proves useful. My whole point here is to compile information to give to people so they know all of their options. I am not trying to tell anybody what to do, just to think about how what one puts into their body affects them.
I just want people to think, that's all. When/if they get sick I want them to be smart about their illness. :))
Showing posts with label chronic illness. Show all posts
Showing posts with label chronic illness. Show all posts
Tuesday, January 3, 2012
So what's going on with me now?? I've dropped the blogging ball for a while!
Ok well today a friend of mine shared her blog on PTSD, so I figure hey why not share my health blog. It is good to share it for a variety of reasons:
A.) It may help other people. If I don't share it, what the heck is the use of it? :p
B.) It will help keep me on task with keeping a written track of this story.
C.) Life is meant to be shared. Even the tough stuff. I mean goodness it is not good to soley focus on the bad stuff, but heck it helps to confide in others.
D.) Dudes, unfortunately pretty much everyone experiences an illness. Or someone else they love suffering from an illness. A lot of times chronic illnesses or an acute illness that becomes chronic- sometimes this chronic part does not need to happen.
E.) I truly believe with every illness or with lack of a current illness diet and exercise can better one's life. I know we all know this already! But practicing it is tough and we know that too.Wooo hooo preventative medicine. I wish I would have been practicing preventative medicine before! Gyosh- I might not have ended up experiencing such a traumatic last year and a half. Glad I can joke about it now. But it was a very serious, terrifying situation.
Ok so I am not completely better yet, but the only signs and symptoms I am currently having are some mild joint pain, nothing crazy. Actually some mild joint pain was my first symptom and it's the last thing left! Now my ANA has not changed, but my symptoms have gone away. So naturally I want to get the ANA down.
What is my current treatment as of now?
Well I am unfortunately still eating just the grassfed beef and the gluten free rice for every meal and taking supplements. And also drinking tap water and this excludes water from a water fountain. People with peanut allergies can have an anaphalytic reaction from a water fountain. Quite frankly drinking from a water fountain was making me sick. Also I was taking algae oil to balance out my Omega 6's and 3's, but I did not read the bottle well enough and discovered there was sunflower seed oil in it, in which the supplement was actually giving me tons of Omega 6's. Still causing me to be quite off balanced. I need to post a blog on balancing one's Omega 3's and 6's. To make a long story short the algae oil was actually being counterproductive. Thanks for the tricky advertising. When one labels a product "Algae Oil, rich in Omega 3's," wouldn't you expect just that? Apparently not. Well that's a market economy for ya, it's hard to know who to trust when everyone seems to be trying to make an extra buck. But that's a whole other rant ;) Let's just say, "Throw it on the ground." Referencing The Lonley Island video. har, har.
So, since I cut out the counterproductive algae oil my stomach is no longer bloated at all. Now if one can take a fish oil supplement without having a problem, according to my doctor that is really a great way to go in balancing the 6's and 3's. I was also reading about pairing food and that aiding in digestion. That different types of food digest at different rates. Who would have known that meat and potatoes are actually not good to pair together. Pairing them together can cause fermentation. I've read this in several sources: You Are What You Eat and Never Be Sick Again. Since eating them separately my digestion has been phenomenol! I mean seriously wow. I digest like I used to! And sometimes my stomach gurgles because it is hungry, wants more food, and is rapidly digesting. I pretty much eat a little throughout the entire day...trying to keep my portions small. Also it may seem simple, but I actually chew my food. This is actually a pretty hard thing for me to do because I have a history of scarfing food down. Just ask my close friends, they know.
Now timing when one drinks water is also pretty interesting. I was reading that drinking and eating simultaneously can actually slow digestion. This is pretty extreme, but in my case I best follow it. They were saying that drinking about a half hour before eating gets the digestive saliva moving. Also that it is better to drink one's drink when it is at room temperature. Ok I don't always do this, sometimes my water is cold. But I really try to. It seems to make a difference. So I am pretty happy with all of this so far.
Ok allergies. Now I currently cannot eat fruits and vegetables. Why?? There are a few theories here. Well I suspect that now that I have cut out the algae oil that my stomach will actually heal. My doctor suspects that I was allergic to something in the supplement. Perhaps iodine. Also I am not joking. When the juice from fresh, organic, brocolli from the Mustard Seed dripped onto my arm, I immediately broke out in a few hives. Glad I did not ingest that! I'm sure that would have made me feel pretty crappy, all of that reaction happening on the inside. So why?? Why would brocolli cause me to be allergic and all fruits and vegetables as a matter of fact? It really is not normal to eat some carrots and to have one's mouth swell. The problem is, is that allergies to fruits and vegetables is becoming all too common. There are a few theories here. Well for one thing there is the latex and fruit and veggie theory. It may sounds pretty crazy, but I don't think that it is really all that crazy when one thinks about it. I'll have to post more about it in its own entry. To make a long story short to avoid allergies from fruits and vegetables buy local, in season produce that is picked when it is ripe. Even if you don't buy the latex theory (in which before making a judgement really you should really wait for me to explain it and to show you my sources), there are more nutrients in fruits and vegetables anyways when they are picked ripe.
Also! In case you didn't know if you are not in an area where fruit and veggies can be grown locally you are eating your plant foods with a ripening chemical on them. There is a book called Tomatoland, By: Barry Estabrook that talks about the tomato's that come out of Florida. My friend April introduced me to the book. The tomato's are picked when they are so ripe that they actually would not even ripen on their own if one sat them for instance on a window seal. There are chemicals placed on these fruits to ripen them. Especially on fruits like banana's and mangoe's, which are only ripened when they are picked. So if one goes on a a fruit or vegetable fast or a juice fast I really think they need to be careful if the fruits and veggies are not homegrown and bought from a trusted source. I honestly was not aware of this until recently, but my hypersenstive body is. For one thing my diet is so clean now that it just reacts like crazy to anything bad for me and for another thing my ANA is still high.
So I really need to eat some fruits and vegetables to make sure I am getting nutrients. It is better to buy canned or frozen fruit because that is most likely picked when it is ripe and then immediately frozen.
I am not sure about the chemicals in canned or frozen fruits and veggies. I need to do more research on it. Any insights are welcome. :)
So needless to say, I cannot wait for winter to be over and to be able to buy produce locally. That is the bad part about living in Ohio. Don't get my wrong, I love my seasons. I am thinking that I can start to can or freeze my own fruits and veggies once they are in season. I have a lot of learing to do in that department. Lots to blog about for anyone interested. I would like to go on a juice fast for a while once the veggies and fruit are in season. I know a diet on beef and rice forever is not sufficient by any means. I just need to get through this school semester, graduate as a nurse, and then keep learning more. I am going to be getting pretty busy coming up here.
So far I am very satisfied and happy with my current progress.
A.) It may help other people. If I don't share it, what the heck is the use of it? :p
B.) It will help keep me on task with keeping a written track of this story.
C.) Life is meant to be shared. Even the tough stuff. I mean goodness it is not good to soley focus on the bad stuff, but heck it helps to confide in others.
D.) Dudes, unfortunately pretty much everyone experiences an illness. Or someone else they love suffering from an illness. A lot of times chronic illnesses or an acute illness that becomes chronic- sometimes this chronic part does not need to happen.
E.) I truly believe with every illness or with lack of a current illness diet and exercise can better one's life. I know we all know this already! But practicing it is tough and we know that too.Wooo hooo preventative medicine. I wish I would have been practicing preventative medicine before! Gyosh- I might not have ended up experiencing such a traumatic last year and a half. Glad I can joke about it now. But it was a very serious, terrifying situation.
Ok so I am not completely better yet, but the only signs and symptoms I am currently having are some mild joint pain, nothing crazy. Actually some mild joint pain was my first symptom and it's the last thing left! Now my ANA has not changed, but my symptoms have gone away. So naturally I want to get the ANA down.
What is my current treatment as of now?
Well I am unfortunately still eating just the grassfed beef and the gluten free rice for every meal and taking supplements. And also drinking tap water and this excludes water from a water fountain. People with peanut allergies can have an anaphalytic reaction from a water fountain. Quite frankly drinking from a water fountain was making me sick. Also I was taking algae oil to balance out my Omega 6's and 3's, but I did not read the bottle well enough and discovered there was sunflower seed oil in it, in which the supplement was actually giving me tons of Omega 6's. Still causing me to be quite off balanced. I need to post a blog on balancing one's Omega 3's and 6's. To make a long story short the algae oil was actually being counterproductive. Thanks for the tricky advertising. When one labels a product "Algae Oil, rich in Omega 3's," wouldn't you expect just that? Apparently not. Well that's a market economy for ya, it's hard to know who to trust when everyone seems to be trying to make an extra buck. But that's a whole other rant ;) Let's just say, "Throw it on the ground." Referencing The Lonley Island video. har, har.
So, since I cut out the counterproductive algae oil my stomach is no longer bloated at all. Now if one can take a fish oil supplement without having a problem, according to my doctor that is really a great way to go in balancing the 6's and 3's. I was also reading about pairing food and that aiding in digestion. That different types of food digest at different rates. Who would have known that meat and potatoes are actually not good to pair together. Pairing them together can cause fermentation. I've read this in several sources: You Are What You Eat and Never Be Sick Again. Since eating them separately my digestion has been phenomenol! I mean seriously wow. I digest like I used to! And sometimes my stomach gurgles because it is hungry, wants more food, and is rapidly digesting. I pretty much eat a little throughout the entire day...trying to keep my portions small. Also it may seem simple, but I actually chew my food. This is actually a pretty hard thing for me to do because I have a history of scarfing food down. Just ask my close friends, they know.
Now timing when one drinks water is also pretty interesting. I was reading that drinking and eating simultaneously can actually slow digestion. This is pretty extreme, but in my case I best follow it. They were saying that drinking about a half hour before eating gets the digestive saliva moving. Also that it is better to drink one's drink when it is at room temperature. Ok I don't always do this, sometimes my water is cold. But I really try to. It seems to make a difference. So I am pretty happy with all of this so far.
Ok allergies. Now I currently cannot eat fruits and vegetables. Why?? There are a few theories here. Well I suspect that now that I have cut out the algae oil that my stomach will actually heal. My doctor suspects that I was allergic to something in the supplement. Perhaps iodine. Also I am not joking. When the juice from fresh, organic, brocolli from the Mustard Seed dripped onto my arm, I immediately broke out in a few hives. Glad I did not ingest that! I'm sure that would have made me feel pretty crappy, all of that reaction happening on the inside. So why?? Why would brocolli cause me to be allergic and all fruits and vegetables as a matter of fact? It really is not normal to eat some carrots and to have one's mouth swell. The problem is, is that allergies to fruits and vegetables is becoming all too common. There are a few theories here. Well for one thing there is the latex and fruit and veggie theory. It may sounds pretty crazy, but I don't think that it is really all that crazy when one thinks about it. I'll have to post more about it in its own entry. To make a long story short to avoid allergies from fruits and vegetables buy local, in season produce that is picked when it is ripe. Even if you don't buy the latex theory (in which before making a judgement really you should really wait for me to explain it and to show you my sources), there are more nutrients in fruits and vegetables anyways when they are picked ripe.
Also! In case you didn't know if you are not in an area where fruit and veggies can be grown locally you are eating your plant foods with a ripening chemical on them. There is a book called Tomatoland, By: Barry Estabrook that talks about the tomato's that come out of Florida. My friend April introduced me to the book. The tomato's are picked when they are so ripe that they actually would not even ripen on their own if one sat them for instance on a window seal. There are chemicals placed on these fruits to ripen them. Especially on fruits like banana's and mangoe's, which are only ripened when they are picked. So if one goes on a a fruit or vegetable fast or a juice fast I really think they need to be careful if the fruits and veggies are not homegrown and bought from a trusted source. I honestly was not aware of this until recently, but my hypersenstive body is. For one thing my diet is so clean now that it just reacts like crazy to anything bad for me and for another thing my ANA is still high.
So I really need to eat some fruits and vegetables to make sure I am getting nutrients. It is better to buy canned or frozen fruit because that is most likely picked when it is ripe and then immediately frozen.
I am not sure about the chemicals in canned or frozen fruits and veggies. I need to do more research on it. Any insights are welcome. :)
So needless to say, I cannot wait for winter to be over and to be able to buy produce locally. That is the bad part about living in Ohio. Don't get my wrong, I love my seasons. I am thinking that I can start to can or freeze my own fruits and veggies once they are in season. I have a lot of learing to do in that department. Lots to blog about for anyone interested. I would like to go on a juice fast for a while once the veggies and fruit are in season. I know a diet on beef and rice forever is not sufficient by any means. I just need to get through this school semester, graduate as a nurse, and then keep learning more. I am going to be getting pretty busy coming up here.
So far I am very satisfied and happy with my current progress.
Monday, October 10, 2011
My angry, bitter stage.
The truth if this diagnoses is correct, I am partially disabled. But it's invisible and working out may actually tear and degenerate my muscles faster.
Not all of my muscles, only the one's mainly affected by my disease. It leaves me not able to work out at all. Granted I am not in a wheelchair. But I don't know if I'll end up in one. It may be sooner than I could have ever imagined.
There is a chance that this treatment will fail.
Or maybe I will end up dying of cancer like a lot of people with my disease. For some reason dermatomyocitis and cancer are often associated.
*BUT* Perhaps they are associated because of celiac disease, which has been shown to be an underlying cause of cancer and now being on a gluten free diet my risk for cancer has greatly decreased?? Perhaps I will fight off this strep, heal my stomach, and my disease will go into remission. I will then take all of this knowledge that I have gained about being healthy and become a for life health nazi. This of course is my ideal scenario.
Wouldn't it be nice.
It would really.
I don't think I've truly accepted the fact that I might not get better. Like I'm in some massive, epic state of denial. It leaves me working hard at trying to get better. It's nice to know there really is a chance, considering I've emailed a woman in Florida with my disease who received remission due to diet. Her take on it was a bit different than the one I am following now. Which is interesting!
Am I convinced still that I am going to die young? I don't think so. I really don't think this is going to happen. Based on a lot of gained knowledge. Based on the amount of improvement.
It's really like a puzzle! A time sensitive puzzle at that. But a puzzle. I do believe it is possible to solve a lot of the mysteries of health. How long each different disease would take, I obviously have no idea.
So I became angry. Really angry at the whole idea of major struggles, some of them being permenant. Wondering why there is so much suffering in the world. And such unequal suffering. Not that I want other people to have to go through what I went through, although I have gained from it. But really, if I live an entire life like this...I just don't think that it is necessary to teach me all that I can learn from this disease. I'd really like my energy back eventually. I'd really like my full mobility back. I put a great deal of effort into being energetic around people, but it's a struggle. I get home and I am really tired. I look at perfectly abled people not using their bodies. People who never really enjoyed being active. But me, I enjoyed being active! I felt an intense passion in being active. I snowboarded, ran, joined the military, worked out, dreamed of climbing a mountain someday, wanted to go backpacking, wanted to run a marathon someday, enjoyed swimming. I am in the process of possibly being kicked out of the military because I cannot pass a physical fitness test. I know I shouldn't feel this way, but it makes me feel shameful. It makes me feel inadequate. Am I going to be able to be a floor nurse a few years down the line?? Possibly not if this disease progresses. Yes I am currenlty a nurses aid, that is a lot of lifting. This disease makes my job twice as hard. But it's all invisible. And sometimes I cry and sometimes I look at the sky and wonder why the world that brings me so much joy can be such a hellish misery at times.
It's perspective? Perhaps. But look at the quadriplegic. Is that quality? I'm not a quadriplegic so I really have to say no. But hey I'm a different person than any other person out there and I have never experienced that type of what I would call suffering. Yes I have suffered. But nothing to that extent. I wonder if there is a quadriplegic out there who is happier than a completely abled person? For some reason I think I can answer yes to that question.
The band the Postal Service.
"Let me please interject here. You're getting carried away feeling sorry for yourself."
Even Michael J. Fox, the man with a disease who up to this point up to my knowledge has never had a case go into remission. Parkinsons disease. He still named his book, Lucky Man. But what is his raw emotion really, what are his thoughts in his lowest moments? And then again there is Hunington's disease. That's a pretty horrible disease. A woman in the nursing home I work at has it. She used to work a full- time job. She used to live a normal life. Now look at her. What are her raw emotions. Both of these diseases take one's mind as the disease progresses. What are the last raw, completely genuine thoughts of people before the disease takes their mind?
Let me say it again.
Let it ring.
"Let me please interject here. You're getting carried away feeling sorry for yourself."
Paraphrasing here, but Fox stated if only my body was where my mind is now.
Disease does make one a better person on the inside, even if they are projecting outwardly in at times a negative and angry way. It matures. It breeds intense compassion and understanding. A time is fleeting and our existence really is tenuous. Just in case you forgot because it is easy to do. Even if one believes in heaven, what does that entail exactly? I guess if it's heaven it's supposed to be good right? In my opinion there is a lot of mystery in this world.
That then turns me to ask another question. Can I be happy with whatever time I have left on this earth, even if it is not my most desired quality? Yes, yes I can be. And that's what I need to start doing. In all honesty it's better for my health. Now that's all nice and easy to be said, but what can I do to actually make this possible? I can list many obvious ideas: yoga, meditation, positive thinking, staying organized, getting enough sleep, seeing friends and family, trying to keep the most normal life as possible...and I can go on...and on...and on...
But what I think is the real answer is on a more umbrella, bigger scale...
I can work hard, learn, live one day to the next, and just enjoy the journey.
Yep. We've all heard it before.
Enjoy the journey.
Every damn day. I had to add this with thought of one of my best friends Roseann.
Enjoy the journey, every damn day!!!
I enjoy the curiosity. The world really is interesting. It keeps me going.
Not all of my muscles, only the one's mainly affected by my disease. It leaves me not able to work out at all. Granted I am not in a wheelchair. But I don't know if I'll end up in one. It may be sooner than I could have ever imagined.
There is a chance that this treatment will fail.
Or maybe I will end up dying of cancer like a lot of people with my disease. For some reason dermatomyocitis and cancer are often associated.
*BUT* Perhaps they are associated because of celiac disease, which has been shown to be an underlying cause of cancer and now being on a gluten free diet my risk for cancer has greatly decreased?? Perhaps I will fight off this strep, heal my stomach, and my disease will go into remission. I will then take all of this knowledge that I have gained about being healthy and become a for life health nazi. This of course is my ideal scenario.
Wouldn't it be nice.
It would really.
I don't think I've truly accepted the fact that I might not get better. Like I'm in some massive, epic state of denial. It leaves me working hard at trying to get better. It's nice to know there really is a chance, considering I've emailed a woman in Florida with my disease who received remission due to diet. Her take on it was a bit different than the one I am following now. Which is interesting!
Am I convinced still that I am going to die young? I don't think so. I really don't think this is going to happen. Based on a lot of gained knowledge. Based on the amount of improvement.
It's really like a puzzle! A time sensitive puzzle at that. But a puzzle. I do believe it is possible to solve a lot of the mysteries of health. How long each different disease would take, I obviously have no idea.
So I became angry. Really angry at the whole idea of major struggles, some of them being permenant. Wondering why there is so much suffering in the world. And such unequal suffering. Not that I want other people to have to go through what I went through, although I have gained from it. But really, if I live an entire life like this...I just don't think that it is necessary to teach me all that I can learn from this disease. I'd really like my energy back eventually. I'd really like my full mobility back. I put a great deal of effort into being energetic around people, but it's a struggle. I get home and I am really tired. I look at perfectly abled people not using their bodies. People who never really enjoyed being active. But me, I enjoyed being active! I felt an intense passion in being active. I snowboarded, ran, joined the military, worked out, dreamed of climbing a mountain someday, wanted to go backpacking, wanted to run a marathon someday, enjoyed swimming. I am in the process of possibly being kicked out of the military because I cannot pass a physical fitness test. I know I shouldn't feel this way, but it makes me feel shameful. It makes me feel inadequate. Am I going to be able to be a floor nurse a few years down the line?? Possibly not if this disease progresses. Yes I am currenlty a nurses aid, that is a lot of lifting. This disease makes my job twice as hard. But it's all invisible. And sometimes I cry and sometimes I look at the sky and wonder why the world that brings me so much joy can be such a hellish misery at times.
It's perspective? Perhaps. But look at the quadriplegic. Is that quality? I'm not a quadriplegic so I really have to say no. But hey I'm a different person than any other person out there and I have never experienced that type of what I would call suffering. Yes I have suffered. But nothing to that extent. I wonder if there is a quadriplegic out there who is happier than a completely abled person? For some reason I think I can answer yes to that question.
The band the Postal Service.
"Let me please interject here. You're getting carried away feeling sorry for yourself."
Even Michael J. Fox, the man with a disease who up to this point up to my knowledge has never had a case go into remission. Parkinsons disease. He still named his book, Lucky Man. But what is his raw emotion really, what are his thoughts in his lowest moments? And then again there is Hunington's disease. That's a pretty horrible disease. A woman in the nursing home I work at has it. She used to work a full- time job. She used to live a normal life. Now look at her. What are her raw emotions. Both of these diseases take one's mind as the disease progresses. What are the last raw, completely genuine thoughts of people before the disease takes their mind?
Let me say it again.
Let it ring.
"Let me please interject here. You're getting carried away feeling sorry for yourself."
Paraphrasing here, but Fox stated if only my body was where my mind is now.
Disease does make one a better person on the inside, even if they are projecting outwardly in at times a negative and angry way. It matures. It breeds intense compassion and understanding. A time is fleeting and our existence really is tenuous. Just in case you forgot because it is easy to do. Even if one believes in heaven, what does that entail exactly? I guess if it's heaven it's supposed to be good right? In my opinion there is a lot of mystery in this world.
That then turns me to ask another question. Can I be happy with whatever time I have left on this earth, even if it is not my most desired quality? Yes, yes I can be. And that's what I need to start doing. In all honesty it's better for my health. Now that's all nice and easy to be said, but what can I do to actually make this possible? I can list many obvious ideas: yoga, meditation, positive thinking, staying organized, getting enough sleep, seeing friends and family, trying to keep the most normal life as possible...and I can go on...and on...and on...
But what I think is the real answer is on a more umbrella, bigger scale...
I can work hard, learn, live one day to the next, and just enjoy the journey.
Yep. We've all heard it before.
Enjoy the journey.
Every damn day. I had to add this with thought of one of my best friends Roseann.
Enjoy the journey, every damn day!!!
I enjoy the curiosity. The world really is interesting. It keeps me going.
Friday, August 5, 2011
My Current Treatment
So what is my current treatment?? Now I am no doctor, so I am speaking from experience, from what I have learned from my doctor, and from what I have read. I will be adding sources to all of this.
Well I was diagnosed with Celiac Disease after being gene tested. I am a carrier of the gene.
Now this is important!!! I originally came out negative for Celiac Disease. When getting tested for Celiac Disease they will look at your gliadin levels. Some labs have cut offs for what level of gliadin they will test for. Some cut off at 20. My gliadin level is currently a 5. This is *actually* very low. But I am still sick. I am very sensitive to gluten. My doctor is very sensitive to gluten as well. When he is a 5, he is very, very sick. Some people are very, very healthy when they are a 5. So the gene testing is much, much more reliable. There are other forms of testing for Celiac Disease, but the gene testing although expensive is the most reliable. If you carry the gene, you carry the gene. :p
So naturally I would be treated with a gluten free diet. Unfortunately I have struggled with many, many different allergies. I was allergy tested, but I have found allergy testing to be somewhat unreliable. I'll get into that later. Some of what I am allergic to caused outward and obvious reactions (rash on entire body, numbness and tingling around lips or throat). Others were not causing such obvious reactions. So it is hard to tell what I am allergic to exactly. Allergies cause an immunological reaction. If my immune system is going to get better I need to cut out what is weakening it. For me it is pretty obviously allergies. For instance after I have an allergic reaction I am very, very tired. It just weakens my whole system. The best way that I have found to recover from an allergic reaction is to take a Clariton (gluten free- at least it is at the moment), stay up for a while to be sure that I do not react anymore (obviously if the reaction is serious enough- affecting the airway and breathing one should definitely go to the emergency room), and then just sleep and sleep.
Because I do not know what I am allergic to exactly I have worked to simplify my diet. My doctor told me to just eat beef and rice. I eat white rice because it is higher in Omega 3's (I will get into that later) and grass fed beef because my body type will not allow me to eat corn and soy fed beef for some reason. When I eat non-grass fed beef I find blood in my stool and become INCREDIBLY fatigued after about 10 mins after eating the beef. So I was pretty happy when I discovered that I can digest grass fed beef. I purchase it from a local farm in mass quantity. It is a bit pricier. I was drinking bottled water, but I was having stomach aches and problems with different bottled waters. I went to a celiac forum and discovered that other people were having problems with this. My guesss is possible cross contamination in the factory. I never would have figured this out, but when you are just eating rice, beef, and drinking water it makes it much easier to find the culprit. So I bought a safe, metal water bottle and only drink water from the faucet.
So I eat grass fed beef and white rice that is labeled gluten free. The label gluten free is integral. I was eating Minute Rice from a regular grocery store, but I was not getting better. There was a recent study that shows although a food may be inherently gluten free, if it is not labeled gluten free than there is most likely cross contamination. I found this to very much be true. I also take supplements to compensate for all that I am missing from my diet. It is important to be monitored while taking supplements. You do not want to be overdosing on vitamins, that could be very, very bad. And I drink water only from my water bottle and the faucet water. I also use Dermassage dish washing liquid (as of now it is gluten free- there is a small chance of cross contamination apparently :/- I called the factory.) I use separate dishes from everyone else and keep them in a big plastic container to avoid cross contamination. Naturally I wash them with a separate rag as well. I also take an antibiotic for strept throat.
Every person is different, every celiac is different. As my doctor says, "Your body is smarter than I am." But in general eating beef and rice works for most people. The difference for me was that I NEED to eat the grass fed beef for some reason.
So yes, this means that I do not eat at any restaurants!!!
...yes, yes :p this does effect my social/dating life (believe me there will be a blog on this)...It also makes it nearly impossible to hide my illness. Which is not necessarily a bad thing. People care, they ask questions, they want to know. People feel "bad" eating in front of me. But honestly after a while eating out with other people (rather them eating and me hanging out) is really not a problem. You just get used to it, you don't crave the food any longer. I just hate that it makes others feel awkward. I mean a lot of society revolves around food. I really realize this now. But hey I definitely think good health is worth the sacrifice and that there are many other pleasures in life aside from food. And the rice and beef does not taste bad!
Well I was diagnosed with Celiac Disease after being gene tested. I am a carrier of the gene.
Now this is important!!! I originally came out negative for Celiac Disease. When getting tested for Celiac Disease they will look at your gliadin levels. Some labs have cut offs for what level of gliadin they will test for. Some cut off at 20. My gliadin level is currently a 5. This is *actually* very low. But I am still sick. I am very sensitive to gluten. My doctor is very sensitive to gluten as well. When he is a 5, he is very, very sick. Some people are very, very healthy when they are a 5. So the gene testing is much, much more reliable. There are other forms of testing for Celiac Disease, but the gene testing although expensive is the most reliable. If you carry the gene, you carry the gene. :p
So naturally I would be treated with a gluten free diet. Unfortunately I have struggled with many, many different allergies. I was allergy tested, but I have found allergy testing to be somewhat unreliable. I'll get into that later. Some of what I am allergic to caused outward and obvious reactions (rash on entire body, numbness and tingling around lips or throat). Others were not causing such obvious reactions. So it is hard to tell what I am allergic to exactly. Allergies cause an immunological reaction. If my immune system is going to get better I need to cut out what is weakening it. For me it is pretty obviously allergies. For instance after I have an allergic reaction I am very, very tired. It just weakens my whole system. The best way that I have found to recover from an allergic reaction is to take a Clariton (gluten free- at least it is at the moment), stay up for a while to be sure that I do not react anymore (obviously if the reaction is serious enough- affecting the airway and breathing one should definitely go to the emergency room), and then just sleep and sleep.
Because I do not know what I am allergic to exactly I have worked to simplify my diet. My doctor told me to just eat beef and rice. I eat white rice because it is higher in Omega 3's (I will get into that later) and grass fed beef because my body type will not allow me to eat corn and soy fed beef for some reason. When I eat non-grass fed beef I find blood in my stool and become INCREDIBLY fatigued after about 10 mins after eating the beef. So I was pretty happy when I discovered that I can digest grass fed beef. I purchase it from a local farm in mass quantity. It is a bit pricier. I was drinking bottled water, but I was having stomach aches and problems with different bottled waters. I went to a celiac forum and discovered that other people were having problems with this. My guesss is possible cross contamination in the factory. I never would have figured this out, but when you are just eating rice, beef, and drinking water it makes it much easier to find the culprit. So I bought a safe, metal water bottle and only drink water from the faucet.
So I eat grass fed beef and white rice that is labeled gluten free. The label gluten free is integral. I was eating Minute Rice from a regular grocery store, but I was not getting better. There was a recent study that shows although a food may be inherently gluten free, if it is not labeled gluten free than there is most likely cross contamination. I found this to very much be true. I also take supplements to compensate for all that I am missing from my diet. It is important to be monitored while taking supplements. You do not want to be overdosing on vitamins, that could be very, very bad. And I drink water only from my water bottle and the faucet water. I also use Dermassage dish washing liquid (as of now it is gluten free- there is a small chance of cross contamination apparently :/- I called the factory.) I use separate dishes from everyone else and keep them in a big plastic container to avoid cross contamination. Naturally I wash them with a separate rag as well. I also take an antibiotic for strept throat.
Every person is different, every celiac is different. As my doctor says, "Your body is smarter than I am." But in general eating beef and rice works for most people. The difference for me was that I NEED to eat the grass fed beef for some reason.
So yes, this means that I do not eat at any restaurants!!!
...yes, yes :p this does effect my social/dating life (believe me there will be a blog on this)...It also makes it nearly impossible to hide my illness. Which is not necessarily a bad thing. People care, they ask questions, they want to know. People feel "bad" eating in front of me. But honestly after a while eating out with other people (rather them eating and me hanging out) is really not a problem. You just get used to it, you don't crave the food any longer. I just hate that it makes others feel awkward. I mean a lot of society revolves around food. I really realize this now. But hey I definitely think good health is worth the sacrifice and that there are many other pleasures in life aside from food. And the rice and beef does not taste bad!
Wednesday, August 3, 2011
My Initial Diagnoses a.k.a. are you for realsies Doc??!!
Hmm…take these statements for instance.
“I have diabetes.”
“I am a cancer survivor.”
The first sentence is just three words. The second sentence is just five words, right? But it’s not hard to see that an entire novel could be written by each and every individual who can make such a statement.
“I have dermatomyocitis.”
So *actually* this is the short version…
“Oh wait I’m not even sure if the results of your muscle biopsy are in. Let me go see (some time passes, I don’t even make eye contact with my dad, I just kind of fiddle with my phone.) Yeah you have dermatomyocitis.” Hmm…I suppose this is a rather routine diagnoses for a rheumatologist. I wasn’t asked how I was feeling. I wasn’t asked much of anything.
I feel as though the doctor has already disconnected from the situation and from me. We had a fantastic repore my first visit. “You’re too young to be in this office. What are you doing here?!” He jokes. I respond, “I know! What’s up with this?” I laugh. We connect, a young guy himself. We began to disconnect when I insisted that my diet was making a difference in how I was feeling. “Davea, what you are eating is not affecting your immune system. Let me test your strength. You are still strong. I have patients sitting in my office who can’t even move their arms and legs.” Lets fast forward back to the response of me receiving my diagnoses,“I figured.”
This doctor, he’s a really nice guy. I then made him explain to me the anatomy behind the immune system.
At this point I honestly wasn’t surprised, I was more surprised my previous visit when he mentioned that I could possibly have dermatomyocitis, I had already obsessively researched it, matched up the peculiar nodules on my fingers with the pictures online, I was mostly mentally prepared for this diagnoses. I had already had my big break down, it was directly after my muscle biopsy surgery. My poor father had to witness it. It was basically a lot of sobbing. A lot of the world spinning. A flooding of memories, hopes and of dreams that I would never get the opportunity to achieve. A lot of anger, “This world’s not fair and even if I somehow got better there would still be others suffering. There’s always someone suffering. This world isn’t fair, if it’s not me, it’s someone else. I have never been and I will never be satisfied with this world.”
This is a true statement. I still feel this way, I’ve always felt this way. Even as an elementary school kid. But I can cope with it. I’ve accepted it. I’m happy, but not happy with the unfairness. Nonetheless I still remain a relatively cheery person. I had read Michael J. Fox’s biography as an emotional comfort when all of this began. He states, “Pediatric cancer patients. They have to learn the meaning of no at a young age.” So yeah, I was prepared for the worst, and when you’re prepared for the worst you’re always prepared for the better.
“The routine drugs for this diagnoses are methlotrexate (a chemo drug), and because this drug is teratogenic (can cross the plancenta) you will have to be put on birth control. Also corticosteroids (these drugs potentially have some pretty severe side effects). Also cancer is often associated with this diagnoses, we will have to do cancer screening on you.” I state, “I want to try out this gluten free diet and I want to be tested for allergies. I am going to wait on the drugs.” He just stares at me silently. I ask, “Have you ever had a patient do this before?” He flatly says, “No.” Our conversation was over and so were our routine visits. He would not send me to an allergy specialist. He wouldn’t send me to a GI specialist either.
After researching my new doctor I needed to get all of my old labs and patient visits printed off to bring to him, I read the patient notes from my rheumatologist. I read all of them from my first visit to my last visit. I am paraphrasing here, but it went something like, “This patient is a pleasure. Thank you for the opportunity to work with her.” He even put, “Patients states to be finding a gluten free diet effective.” To my last visit, “I spent an extensive period of time in the room with this patient explaining the anatomy behind her illness as requested.” Chapter closed. Next chapter. New doctor. Nice guy. Good lookin guy. haha. But he wouldn’t work with me. I wanted to search for a cure, not a temporary band-aid.
I feel as though the doctor has already disconnected from the situation and from me. We had a fantastic repore my first visit. “You’re too young to be in this office. What are you doing here?!” He jokes. I respond, “I know! What’s up with this?” I laugh. We connect, a young guy himself. We began to disconnect when I insisted that my diet was making a difference in how I was feeling. “Davea, what you are eating is not affecting your immune system. Let me test your strength. You are still strong. I have patients sitting in my office who can’t even move their arms and legs.” Lets fast forward back to the response of me receiving my diagnoses,“I figured.”
This doctor, he’s a really nice guy. I then made him explain to me the anatomy behind the immune system.
At this point I honestly wasn’t surprised, I was more surprised my previous visit when he mentioned that I could possibly have dermatomyocitis, I had already obsessively researched it, matched up the peculiar nodules on my fingers with the pictures online, I was mostly mentally prepared for this diagnoses. I had already had my big break down, it was directly after my muscle biopsy surgery. My poor father had to witness it. It was basically a lot of sobbing. A lot of the world spinning. A flooding of memories, hopes and of dreams that I would never get the opportunity to achieve. A lot of anger, “This world’s not fair and even if I somehow got better there would still be others suffering. There’s always someone suffering. This world isn’t fair, if it’s not me, it’s someone else. I have never been and I will never be satisfied with this world.”
This is a true statement. I still feel this way, I’ve always felt this way. Even as an elementary school kid. But I can cope with it. I’ve accepted it. I’m happy, but not happy with the unfairness. Nonetheless I still remain a relatively cheery person. I had read Michael J. Fox’s biography as an emotional comfort when all of this began. He states, “Pediatric cancer patients. They have to learn the meaning of no at a young age.” So yeah, I was prepared for the worst, and when you’re prepared for the worst you’re always prepared for the better.
“The routine drugs for this diagnoses are methlotrexate (a chemo drug), and because this drug is teratogenic (can cross the plancenta) you will have to be put on birth control. Also corticosteroids (these drugs potentially have some pretty severe side effects). Also cancer is often associated with this diagnoses, we will have to do cancer screening on you.” I state, “I want to try out this gluten free diet and I want to be tested for allergies. I am going to wait on the drugs.” He just stares at me silently. I ask, “Have you ever had a patient do this before?” He flatly says, “No.” Our conversation was over and so were our routine visits. He would not send me to an allergy specialist. He wouldn’t send me to a GI specialist either.
After researching my new doctor I needed to get all of my old labs and patient visits printed off to bring to him, I read the patient notes from my rheumatologist. I read all of them from my first visit to my last visit. I am paraphrasing here, but it went something like, “This patient is a pleasure. Thank you for the opportunity to work with her.” He even put, “Patients states to be finding a gluten free diet effective.” To my last visit, “I spent an extensive period of time in the room with this patient explaining the anatomy behind her illness as requested.” Chapter closed. Next chapter. New doctor. Nice guy. Good lookin guy. haha. But he wouldn’t work with me. I wanted to search for a cure, not a temporary band-aid.
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